Viewing 20 posts - 1 through 20 (of 25 total)
  • #75254
    Thick mucus

    Is it normal to have very very thick mucus? I have not had much help from the hospital, and my GP says he has never herd of OPMD. Swallowing food has become a bit of a problem, and I have read a few posts on spit problems, but every night I am struggling to get the thick mucus up, I’m almost sick sometimes.
    It only happens in the middle of the night.
    Any info would be good.

    Brian

    megga
    Participant
    Posts: 3
    Joined: 17/03/2014
    #94139
    Re: Thick mucus

    Perhaps your sleep position is aggravating an issue. Some of us sleep on our back or side but our upper body is elevated slightly. Sorry you are not getting much support from your hospital :(

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #94140
    Re: Thick mucus

    My brother has had this issue for a few years. An LSU machine might be of benefit to you. It’s a portable suction machine which you can use to remove mucus from your mouth or throat if you’re struggling to cough it up. He also uses mucodyne/carbocystine which thins mucus which is a common treatment in cystic fibrosis but has been really helpful for him. We’ve been coined the pioneers by his care team as they haven’t come across someone with so many complications as him. So a lot of his symptomatic treatment is copied from CF patients; mucodyne to thin mucus, azythromycin 3x weekly for infection prevetion, LSU for shifting secretions. Also if you’re having trouble with swallowing go armed with info to our GP, tell them you’re finding it difficult to swallow (and mention your epiglostis; the thing that separates your wind-pipe and your food-pipe, if you will), tell them it’s happened in people with MD before, that an LSU might help and you want an ENT refferal and that you’ve heard mucodyne can be helpful as well. Throw the information at them so that they literally can’t ignore you. If you know your stuff, they can’t palm you off like I’ve seen so many other people say about their dismissive GP’s.

    I really hope you find something to help. Also I hope this issue hasn’t been too distressing in the year since you posted it!

    – OP sister

    Frankenfred
    Participant
    Posts: 4
    Joined: 14/07/2015
    #175317
    Reply To: Thick mucus

    Hi mate have similar issue 63 yo diagnosed with OPMD 10 years ago although they cannot find the faulty gene. Eyes and throat cause greatest issue people think l am drunk or drug taker Mucus at night becoming an issue need to be careful with diet.

    andyaa
    Participant
    Posts: 0
    Joined: 09/02/2019
    #175324
    Reply To: Thick mucus

    I really would support Frankenfred here and suggest that you re visit your GP as soon as you can, armed with as much information as you can. There are many treatments available for sticky mucus and I am sure he/she will be able to advise you if it is becoming that distressful for you. You may well have seen this fact sheet

    Oculopharyngeal muscular dystrophy (OPMD) factsheet

    AS you will know the condition is very rare so it should not be too surprising that your GP does not know of it, you just need to know that he/she should know a specialist that does. My own GP, my father’s and my brother’s (in the USA) had never heard of my condition , FHSD, so this is not an uncommon finding with GP’s.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #175330
    Reply To: Thick mucus

    Hi Brian I have recently been diagnosed with opmd, my symptoms were progressing fast before I got my diagnosis,I was advised by speach and language to have full fat fortified milk but I found this mucus forming and very stringy (I know gross),I also discovered that I probably have celiacs,by changing my diet my overall symptoms improved somewhat, unlike you I’ve experienced possitive experiences with my health team hope this may be of use , wishing you well Jeanette

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175337
    Reply To: Thick mucus

    Hi what age did you get diagnosed at and does this run in your family? I am 63 and was diagnosed at about 40 although they could not find tge faulty gene

    andyaa
    Participant
    Posts: 0
    Joined: 09/02/2019
    #175369
    Reply To: Thick mucus

    Hi I got diagnosed last year aged 55,my eldest sister died in her mid 60s of this but that’s because she wouldn’t have a peg feed.i found what was wrong by joining the dots but I also helped to improve it a bit again by joining the dots.i have good days and bad days , for me getting through each day is a plus , eating out is a no no , I have a protein shake in the morning not to high in protein though , plus eating enough carbs is important ,to eat little and often . hope you find this a little helpful

    Crazy cat
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    Joined: 27/01/2019
    #175370
    Reply To: Thick mucus

    Hi Crazy Cat. Good to hear from you my brother died at 57 from sinus cancer which was terribly sad because we shared much together and we use to compare notes with our condition. I am quite lucky l still walk and somtimes run. The throat effects my speach and cost me my career as an English teacher Cannot talk in noisey or loud room my eating is ok although l sometines cough quite a bit if not careful. My eyes are susceptible to infections because l had muscles tightened in eyelids. People thought l was a drug user or drunk. Quite embarrasing. My cousins and sister also have the condition Benetic in Australia are working on a gene silencing treatment but l wouldn’t hold my breath. Partiularly when they cannot identify the faulty gene. Stay in touch crazy Cat and take care.

    andyaa
    Participant
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    Joined: 09/02/2019
    #175372
    Reply To: Thick mucus

    Hi andyaa nice to hear from someone who understands what your going through,I too have siblings and cousins with the same condition,my dad also died of this condition,by doing my own investigations have gone on to a strict celiacs diet which has improved my symptoms somewhat.my neurologist was very impressed although symptoms flag a bit in the evenings , just take each day as a bonus.ifound that each of my family members symptoms varies as I’m sure you already are aware ,hope you’re keeping well crazy 🐈

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175373
    Reply To: Thick mucus

    Hi Crazy Cat, just a quick question were tgey able to identify your faulty gene? Also, whT age did your father die? In some repects it appeared my father had the condition but he lived until he was 80 Nd died from Parkinsons. One more question. Can you smile? I cannot

    andyaa
    Participant
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    Joined: 09/02/2019
    #175374
    Reply To: Thick mucus

    Hello,yes they were able to identify the gene ,my father was 56.it wasn’t on his death certificate as cause of death but I’m very sure he had this as my siblings are half siblings,my father died in 1968.the findings for opmd varies in each family member you can have it quite mild and live to normal age

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175375
    Reply To: Thick mucus

    In answer to the last question I can smile but I don’t have a naturally smiley face :lol: what advice have you been given if any

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175376
    Reply To: Thick mucus

    Thanks for your quick reponse 56 was way too young. Yes you are correct the condition seems to be very different in severity from person to person However, it is still a very unpleasant thing The other day l was walking around tge house bare feet because it was 35c here My toes became inverted and caused me to fall heavily and hurt my back Fortunately only temporarily.I learnt my lesson no bare foot walking. Does this happen to you. What about your eyes are tgey a problem? I have no contact with health professionals after my initial assessment by a professor. He came to my house and wanted to include me in his text books but really he could not help me it was more about helping hinself with his text books. Since my eyelid surgery l have to constantly use eye drops and gel. Severe eye infection is very painfuk and can result in sight slight loss so l am very xareful and even tape my eye shut at night sometimes. CN you walj ok my legs are very thin calf muscle has wasted and l won’t wear shorts I have been toying with toying with the idea of anabolic steroids to help muscles what do you think? I no they can be dangerous but so is muscle loss. Cheers

    andyaa
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    Joined: 09/02/2019
    #175377
    Reply To: Thick mucus

    Excuse the errors predictivd text

    andyaa
    Participant
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    Joined: 09/02/2019
    #175378
    Reply To: Thick mucus

    Haven’t you been seen by a neurologist.as for your foot problem,I have a hammer toe on once foot which is very painful,but in the last couple of weeks I have been getting leg pains.after modifying my diet my ptosis improved,my two cousins on the other hand have had eye surgery for this 3 times and now have trouble closing there eyes.going back to getting the right help you can see a genetic councillor, I’m currently being seen by speach and language and a dietitian and a gastroenterologist as well as a neurologist which have all been great I even had help with my mental health but that didn’t work for me so I took up painting instead much better,if you’re not getting the right help you need to become a cheeky gate until you get the right help , hope this is of some help

    Crazy cat
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    Joined: 27/01/2019
    #175379
    Reply To: Thick mucus

    Judging by the temperature you don’t live in England so I don’t know what kind of help they offer you where you are

    Crazy cat
    Participant
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    Joined: 27/01/2019
    #175380
    Reply To: Thick mucus

    I live in Melbourne Australia.

    andyaa
    Participant
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    Joined: 09/02/2019
    #175381
    Reply To: Thick mucus

    Wow crazy cat that is amazing. I have seen geneticist and neurologist but they cannot help and because they cannot identify the faukty gene they say l must have a variant of OPMD. Not sure if this is better or worse.

    andyaa
    Participant
    Posts: 0
    Joined: 09/02/2019
    #175382
    Reply To: Thick mucus

    You have a beautiful country . first off I wouldn’t take steroids without medical advice weight training would be a better option.when I first got diagnosed I tried creatin made me ill.i don’t know how much you’ve read about MD from what I’ve read the CK levels are raised so be careful doesn’t sound like you get much help there, as for wearing shorts only you aware of your lower legs anyway people talk to you not your legs and if they do notice then they’re shallow ,sad , let’s face it we are our own worst critic’s.

    Crazy cat
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